I’ll never forget the first cough. The way my body rattled as I coughed. It was too much for a nine year old’s body to handle.
I grew up with fairly average allergies. I’m from the City of Trees. So pollen season is nobodies friend. We’re all sharing the Kleenex from January to May. My skin is a little more sensitive than most and I’m allergic to grass which just meant I got a rash when we played out in it. Allergies never seemed like a big deal and when they bothered me I just took over the counter medication. But then I was nine.
I was in third grade and that’s when I got it. The coughing that made me physically hurt. My back was in agony, and I was coughing up mucus roughly the size of my thumb. It was terrible. I went on all these different medications until I finally had to go to the doctors. I got an x-ray of my chest. I had an x-ray before then when I was either seven or eight, I was in second grade when I broke my arm for the first time. So I have pneumonia. But what I didn’t know at the time was I also had asthma. I wasn’t diagnosed with asthma until I was older but when I got all my medication for the pneumonia I was given an inhaler alongside everything. I got medication. Augmentin to be precise.
Right augmentin ruined everything. I was taking time off of school and once I was on medication I could finally return right? I broke out in hives at school and immediately went back to the doctors for another prescription. While I was coughing so hard I was afraid I would pull a muscle mind you. I eventually took amoxicillin and the infection cleared up after weeks. Just because it clears up once doesn’t mean that’s the end.
I go through the rest of elementary school fairly healthy. I sometimes had trouble breathing when I ran during PE but it was such a short section of the school day I didn’t really think about it too much. I was still able to run so that was enough for me. It wasn’t enough by the time I was 12 and starting 7th grade. PE became hell. Throughout my middle school career my fastest mile time was 9:34, which was fairly decent but I would have to stop and start and walk and I would feel like complete garbage after I ran. I would be coughing and my throat would feel like it was on fire, it was like the wind was knocked out of me every day for 12 minutes of class. I was fed up. I was diagnosed with allergy and exercise induced asthma by the end of 7th grade. My inhaler made things a lot better but I will always have breathing problems when I run, no question about it.
And in 8th grade I got pneumonia again.
The aching the wheezing and the mucus returned. I don’t remember too much about that time but what I do know is week after I got over it…I broke my wrist and thumb again. Needless to say I was frustrated. My body was falling apart and I was only 13. It’s no fun constantly filling yourself full of steroids and caffeine thinking you’re having an asthma attack when you actually have a pneumonia. You get jittery after using your inhaler, especially when I had just recently got my inhaler and was very sensitive to it at first. I remember one instance where I used it the night of the Olympic Opening Ceremony, the London summer games. I was up all night after the ceremony because I was so jittery I couldn’t relax. After a few years I got used to it finally.
So I go through highschool and something happens the winter break of my senior year. I had sort of weaned myself off allergy medications. It still seemed too early to be taking them I mean who’s allergic to things in winter?
I am of course.
It’s winter break and I’m trying to eat and suddenly things aren’t right. There’s this feeling in the back of my throat. It’s almost like food kept catching there and I wasn’t swallowing right. I gave it a week or so and I started to try and see if it was one food doing this to me. I knew meat was a big irritant and I made the switch to just broths and soft foods and soups for two or three weeks. By the time I returned to school I had lost a lot of weight, and I was already slim to begin with and I was having trouble concentrating. We finally got in to see a GI doctor and that’s when I went through test after test to figure out what was going on. I had over six vials of blood drawn I remember, and I got x-rays done of my trachea to make sure my anatomy was right. It didn’t show me anything except I had a small trachea which I already knew because I had trouble swallowing pills up to then. That explained it. And the choking feeling which I believe I have always had but that year it finally got irritated enough for me to really be bothered by it. Then my doctor decided on an endoscopy.
Endoscopy is just a camera down your throat to look at your throat and upper stomach. I was 17 at the time so I was admitted to the peds wing for surgery. Which I actually loved. I remember that my surgery was delayed. I didn’t have a separate room, I was there for out patient surgery, or same day surgery. Which means that I was in the same room as all the ER patients who needed surgery, for peds. Something peds does to make the kids feel more at home for the short, scary, amount of time they’re waiting is give them a custom pillowcase. I sort of knew this one endoscopy wouldn’t be the end of my hospital visits, ever, and I took the pillowcase I got directly to my heart.
Who doesn’t love elephants?
I always liked them for sure. I liked a lot of animals when I was younger, giraffes for sure, and flamingos. I remember I had stuffed animals of each. So elephants wasn’t out of the blue for me to enjoy and I had always cared about conservation as well. This pillowcase however was given to me. I didn’t have a choice. It was there and they said at the end of your procedure you got to keep it. That gives you hope I think. Obviously I wasn’t there for a life threatening procedure. I had already binge watched 11 seasons of Grey’s Anatomy by then and sure I had horror stories running through my mind. My hospital is a teaching hospital which is one of the things I love about it. I want to help others education even if it means some of my care is well… messy. They’re learning still. But still I held onto hope. If I survive this, I can survive whatever the hell my body was throwing at me.
My procedure went fine. I like being under anesthesia. It’s the best sleep i’ve ever had. I was carted into the OR, I could hear some resident talking about a position they turned down and then I was out. Waking up was fine. I wasn’t over the top or saying weird things. I was just groggy and I couldn’t walk. I was also starving. That’s all.
The endoscopy showed that I had EOE.
EOE is Eosinophilic esophagitis. You can read more about it here, but the basics is that it’s white blood cells that collect in the throat due to respiratory allergies. It presents as heart burn but it was undetectable for me. I have to take heart burn medication for it. But that wasn’t a cure all for me. I started taking it and three weeks after my endoscopy I started coughing. It was a nasty cough and so much time had passed that we were in denial. It is common to get pneumonia after an endoscopy but it would have presented sooner is what we believed. It was all the warning signs of pneumonia. I go back to the doctors and my resident is busy so as a teaching hospital they assigned another doctor for a consult. We were waiting for five hours for the doctors and then they misdiagnosed me. Okay maybe misdiagnosed is a strong word but they were wrong. I was told to take over the counter medication and get a humidifier. Within the week I was coughing up blood and I went to the ER because I had trouble breathing.
I got an X-ray and our fears were right.By the way the peds ER is amazing. The nurses are so nice and they had music playing from their stations, and there was one point where one nurse came around and he blew bubbles at everyone. It was fun. I of course was just hooked up to a nebulizer until my lungs opened. That’s when it got scary. The doctors came over to me and we began talking about how many cases of pneumonia were on my chart. It was a lot for someone who’s generally healthy. There was a brief period where we did testing for cystic fibrosis. I would hold my elephant pillow tight and I would worry. I knew that the next step if I was diagnosed would generally be a lung transplant. I am thankful every day that I do not have cystic fibrosis and I look up to those who do have it. I know half of your struggle. I know parts of your chronic pain. We are not too different. I am a lucky one. I don’t loose hope for others to be lucky though.
I eventually did allergy testing and went through appointments until I was prescribed other medication to keep the allergies in check alongside the medication for the EOE. Things settled out. My pneumonia went away. I’m always paranoid it will return and I don’t think the fear will ever leave. I don’t know why my body does this. I get a pain in my back and I start coughing and the fear starts. It’s frustrating. But nothing is more frustrating than my recent illnesses.
So in June of last year I had a check up endoscopy to see if the medication was working. Only a few allergies cells showed up on the biopsy. I’m not cured but I have hope again. I went to college for the first time this year and I had several events that caused anxiety. Through out my first semester I started having stomach pain. I believe now that it may be anxiety induced but it was so bad I would stay home from classes. I also finally made the decision to go vegetarian because of it. I knew meat irritated me because of the EOE, and I could even be allergic to certain antibiotics in the meat and all these possibilities. I just gave it up because even if maybe I just had a bad sandwich once, it wasn’t worth it for me to keep supporting the industry as whole. It was a conscious choice I will never regret. The illness eventually kind of went away but I had to have another procedure for that. I got my second pillowcase from that trip. That pillow case has wonderwoman on it and I love it. I love it a lot.
The main influence on me throughout all of this was being patient with myself and with time. Test results are some of the scariest moments of your life and when I taught myself to have faith and to trust my doctors and to stop myself from worrying endlessly over them the more I was able to hold onto hope. I didn’t have life threatening diseases or surgeries here but they a take a toll on my life. When I got my elephant pillow I felt like I was being told to hang on. Since then I’ve researched elephants, I’ve donated various ways to multiple charities and signed petitions to end elephant poaching because that pillow made me value myself so why shouldn’t I value them. It was this weird twist of fate that I received that pillow case and I will never know who made it. But it was during that time of the year when Ellen Pompeo started to get involved herself with a lot of conservation of elephants and really opened my eyes to what needed to be done. I felt like fighting for elephants gave me this voice that was so personal because in some way through that pillow case they fought for me.
Elephants are strong but they’re also patient and some of the most intelligent animals. The phrase an elephant never forgets is rooted in the elephant’s expansive mind and ability to recall events and things. I will never forget the path that led me here and I will never forget the herd I found alongside me and that pushed me through. I suffer and I struggle but I also have patience.
I will never forget.